Nutrition and behavioral health in cystic fibrosis: Eating and body image
Abstract
People with CF (pwCF) are at high risk for malnutrition, making nutritional management a critical aspect of CF care. Over the past several decades, optimal nutritional status for pwCF has been defined by body mass index (BMI) based on evidence linking suboptimal BMI to decreased lung function and life expectancy, although more recent changes in CF care may also bring changes to how nutritional health is defined. The historical focus on weight, BMI, and nutrition as key parts of multidisciplinary CF care starting at an early age places pwCF at increased risk for body image concerns and disordered eating. The landscape of CF care is evolving with the approval of highly effective modulator therapies (HEMT) and resulting improvements in growth; however, issues related to body image and eating remain important to consider, especially as past difficulties gaining weight may shift to discomfort with one's weight gain and/or physical appearance. This review aims to describe how body image concerns and disordered eating occur in pwCF across the lifespan; to discuss evidence-based approaches to addressing these concerns; and to identify future directions for research and clinical practice in assessing and treating eating disorders and body image concerns in this population.
1 INTRODUCTION
Nutritional management has always been a critical component of cystic fibrosis (CF) care. Although CF can impact many of the major body systems, it is primarily characterized by pulmonary manifestations of the disease. The majority of people with CF are born with exocrine pancreatic insufficiency (EPI) and require pancreatic enzyme replacement therapy (PERT) with all food intake.1 Without PERT, people with CF (pwCF) would be unable to absorb dietary fat, which may result in GI symptoms and growth failure. PwCF have increased energy needs and higher caloric requirements to maintain adequate body weight; however, meeting these nutritional requirements can be challenging due to (a) poorer efficiency at processing and absorbing nutrients, and (b) the difficult nature of consuming the intensive recommended daily caloric intake. Thus, from an early age, there is a significant focus on maintaining a healthy weight in CF care as higher body mass index (BMI) has been found to be associated better disease outcomes.2
Historically, pwCF were characteristically smaller in body size and stature due to these challenges with malnutrition. Longstanding research and clinical guidelines have consistently emphasized the association between low BMI and decreased life expectancy and poorer pulmonary outcomes.3, 4 The combined importance of nutrition and focus on weight maintenance place pwCF at an increased risk for body image concerns and, for some, disordered eating. The purpose of this review is to describe how body image concerns and disordered eating occur in pwCF across the lifespan; to discuss evidence-based approaches to addressing these concerns; and to identify future directions for research and clinical practice in assessing and treating eating disorders and body image concerns in this population.
2 CURRENT NUTRITIONAL GUIDELINES
Extensive research has shown that improved nutritional status for pwCF is associated with better lung function, fewer complications of CF, and better survival.5, 6 Thus, nutritional interventions for pwCF are often implemented aggressively in multidisciplinary settings starting from an early age. Optimal nutritional status for pwCF is primarily defined by BMI based on evidence linking suboptimal BMI to decreased lung function and life expectancy.2, 7 In 2008, the Cystic Fibrosis Foundation (CFF) therefore established clinical guidelines for pwCF to be at or above the 50th percentile in BMI for children (for infants, weight for length is used instead of BMI until 2 years of age), and 22 kg/m2 or higher for adult females and 23 kg/m2 or higher for adult males with CF.4 Because of these recommendations and the potential severity of malnutrition for pwCF, nutritional interventions have historically focused on increasing BMI through a high-calorie, high-fat, high-protein diet with oral supplementation and enteral feeding if weight gain continues to lag. However, with the introduction and approval of highly effective gene modulator therapy (HEMT) and the associated positive effects on nutrient absorption and weight gain, there is recognition that the current nutritional recommendations are in need of re-evaluation.3, 8
Recently, in May 2023, Leonard and colleagues published “Nutritional Considerations for a new era: A CF foundation position paper” as a multidisciplinary response to the changing nutrition needs of pwCF after the initiation of HEMT.8 The authors acknowledge that, while HEMT's effects on the underlying genetic defect in CF.9 have made it easier for pwCF to gain weight, this in turn may lead to changes in eating habits and body image disturbance in patients who have always had a previously intense focus on BMI.10 The recognition that nutritional needs for pwCF may be shifting, and the increasing awareness of body image and/or eating concerns in response to HEMT, are both instrumental in informing multidisciplinary care. Recommendations now prioritize mutually agreed upon dietary goals based on personal and lifestyle needs, and there is a call for providers to prioritize assessment, collaborative discussion, and treatment of body image and/or eating concerns within the context of multidisciplinary CF clinic visits.
3 FEEDING, DISORDERED EATING, AND BODY IMAGE CONCERNS IN PWCF
Despite the consideration for new nutritional recommendations after the initiation of HEMT, nutritional monitoring and BMI/weight for length measurement beginning in infancy remain crucial for comprehensive treatment of CF. The focus on nutrition, weight gain and/or weight maintenance during multidisciplinary CF visits can often cause increased stress for pwCF and can foster a preoccupation with body size, body image, and eating over time.11, 12 Similarly, the emphasis on prioritizing high-calorie, high-fat foods over the past several decades may have contributed to dietary recommendations that do not promote intuitive, flexible eating of a variety of nutrient-rich foods, further contributing to eating concerns.8 Again, the intense focus on nutrition from early childhood can create a foundation for later eating disorders and/or disordered eating, and body image concerns.13
3.1 Pediatric feeding challenges
Caregivers of children with CF (cwCF) often feel increased pressure to meet the recommended nutritional requirements14, 15; however, despite the emphasis on nutritional adherence only 15%–23% of children meet the recommended 120%–150% RDA/day.16, 17 In children without chronic illnesses, picky eating can be a developmentally appropriate, normal occurrence, although still causing mealtimes to be stressful and demanding.18 In cwCF, the added necessity of optimal growth and nutrition makes ensuring adequate nutritional intake a significant strain on families.19 Several studies have documented increased elevations in parental stress around feeding and mealtimes in families of a cwCF.14, 20 In a qualitative study of parents’ perspectives on achieving CF nutrition recommendations, parental stress emerged as a major theme of ongoing challenges that impact CF management.14 Parents described feeling “desperate” for their child to eat and the stress of feeding as “never ending.”
Understandably, the intense focus on the importance of nutrition and the associated stress placed upon parents to ensure their cwCF eats can compromise parent-child interactions at mealtime.21, 22 In several studies of parents and young cwCF, parents exhibited greater frequency of child management strategies (e.g., commands, reinforcement, coaxing, physical prompts to eat) during mealtimes23, 24 compared to non-CF parents, and tend to keep their child at the meal longer.17, 25 Longer mealtimes combined with ineffective parenting strategies to encourage eating are more likely to lead to challenging child behaviors that, in turn, associate with lower caloric intake.17, 23, 26 Further, parents of cwCF report more child behavior problems at mealtimes than parents of children without CF (e.g., whining and crying, delaying eating, refusing meals, poor appetite, spitting out food, getting up from the table21, 23, 26). However, in a study employing direct observation of mealtimes, cwCF did not differ from children without CF in the type or frequency of mealtime behaviors exhibited; rather, parent behavior differed significantly between the two groups.24 These studies together illustrate the complexity of nutrition management for CF in early childhood. Parents experiencing pressure to meet CF nutritional requirements may be more likely to utilize ineffective parenting strategies at mealtimes to encourage their child to eat, while also perceiving that their children demonstrate abnormally challenging mealtime behaviors that are actually developmentally appropriate. Such maladaptive parent-child dynamics reinforce each other and can contribute to negative relationships with eating and food that set the stage for future challenges. Indeed, as conflict and communication difficulties between caregivers and children naturally increase during adolescence, negative patterns established around mealtime in early childhood may only be exacerbated over time.
3.2 Body image and disordered eating in adolescents and young adults with CF
Body image is a complex and multifaceted construct that encompasses a person's evaluation of their body, including emotions and thoughts associated with body shape and size, attractiveness, and functionality.27 Body image concerns and/or dissatisfaction can be a key predictor for disordered eating behaviors and are often considered to be the best-known contributor to the development of anorexia nervosa (AN) and bulimia nervosa (BN).28, 29 It is well understood that those living with chronic illnesses, and especially illnesses with gastrointestinal manifestations that require nutritional management such as CF, is itself a risk factor for body image concerns and/or eating disorders.30
Body image concerns increase during adolescence and young adulthood in general, due to developmentally typical physical and cognitive changes that occur which make focus on body and appearance more likely.31, 32 Societal and cultural ideals emphasizing thinness in women and muscularity for males, coupled with an increased awareness of social comparison, are particularly salient in this developmental period, and internalization of both can lead to negative evaluation of self, appearance, and body.33 The importance adolescents place on their peers’ opinions, their own social status within peer groups, and on social inclusion are especially powerful during this period, all of which can further impact perceptions of self, and often, body image. Further, adolescents and young adults with CF (AYAwCF) begin to experience increased autonomy and independence from the family unit, where meals, calories, and adherence to enzymes are more closely monitored. The combination of increased social comparison, decreased parental monitoring, and sensitivity to bodily changes during this developmental period place AYAwCF at an increased risk for body image concerns and disordered eating, and research over the past several decades has documented that both continue to be a prevalent concern in the CF population.10, 12, 34, 35
Historically, AYAwCF maintain low body weight more easily than those without CF, but have the added focus on body size, weight, and nutrition as part of frequent CF multidisciplinary visits, making self-scrutiny about their bodies more probable.15, 24 Not surprisingly, the effects of CF disease progression on the body along with deep-rooted Western cultural ideals for body shape and size manifest differently among genders. A critical review of studies examining body image among AYAwCF.36 showed that females generally had a more positive body image than males due to their low body weight and thin appearance, while males were more unhappy with their perceived weight and instead desired to gain weight and become more muscular. Body image concerns may therefore affect adherence-related behaviors, such as the likelihood of taking pancreatic enzymes to promote weight gain, or following nutritional recommendations in general.36, 37 Importantly, no research to date has investigated if or how body image concerns present in gender-diverse AYAwCF, or among AYAwCF who represent cultures that are not Euro-centric and/or primarily Caucasian. It is critically important for future research to include diverse participant samples to clarify how these concerns may or may not differ across pwCF with a wide range of identities and cultural backgrounds.
Although understudied, there is a presence of eating disorders (EDs) and/or disordered eating behavior in pwCF across the lifespan. The risk for formal eating disorder diagnoses such as anorexia nervosa (AN), bulimia nervosa (BN), binge eating disorder (BED), avoidant restrictive food intake disorder (ARFID), and more general disordered eating behavior (e.g., restricted dieting, binge eating) is higher for those experiencing chronic illnesses that involve significant dietary management (diabetes, celiac disease, inflammatory bowel disease), and CF is no exception. However, past research suggests that for AYAwCF, disordered eating behaviors are more common than diagnostic EDs.13, 35, 38 In a comprehensive systematic review examining studies of AYA with diet-related chronic illnesses and associated risk for disordered eating, AYAwCF did not meet full criteria for an ED in any study reviewed, but elevated disordered eating behavior was prevalent in most studies, with behaviors symptomatic of AN (e.g., restricted eating) emerging as most common.38 Along with typical disordered eating behaviors that exist (e.g., calorie restriction, binge eating), disordered eating behaviors that are specific to those with CF include avoidance of enzymes or nutritional supplements that promote weight gain (if body image concerns exist39) and lower adherence to high-calorie nutritional recommendations.40 Other CF-specific behaviors may include avoidance of insulin if CR-related diabetes is a concern, and, recently, inconsistent adherence or refusal of HEMT as weight gain are known effects of both therapies.
Much of the research on body image and eating disorders in pwCF has occurred before the development and increasing use of HEMT. However, in a recent study of 14–35-year-olds with CF, the presence of eating disorder symptoms including those of avoidant restrictive food intake disorder (ARFID) was significantly higher than in the general population.12 This is the first study to examine ARFID symptoms in pwCF, and more research is needed to clarify how ARFID may present in pwCF across the lifespan, particularly in the era of HEMT. As weight gain is one of the most common effects of HEMT, it is possible that the nature of body image concerns and/or disordered eating for pwCF may shift.41 For some, body image or eating behaviors may improve along with positive changes in overall health. For others, body image may decline and disordered eating may increase to compensate for unwanted weight gain. Additional studies examining the prevalence and nature of body image concerns and disordered eating in pwCF as they relate to HEMT are needed to clarify these issues, including how they may relate to modulator adherence. As the life expectancy for pwCF has increased significantly over the last several years, there is also a need to examine how body image and eating concerns present in older adulthood. There is very little research on older adults with CF in general, including if and how eating behaviors and body image concerns manifest over time.
4 CONSIDERATIONS FOR THE CF CARE TEAM
The CF care team and CF clinical guidelines are inherently multidisciplinary, with a focus on physical, social, and emotional health. Many of the current CF care guidelines involve a multidisciplinary approach to screening and treatment (i.e., CF-related diabetes, CF liver disease, mental health) and are well-positioned to address underlying stressors related to growth, feeding and nutrition before they emerge as body image concerns or disordered eating behaviors. Nutritional outcomes for pwCF are also closely linked to socioeconomic status. Food insecurity and food access have been shown to be predictors of nutritional status among pwCF.42 and therefore need to be considered and actively addressed across all levels of CF clinical care.
4.1 Differential diagnostic considerations in the multidisciplinary CF setting
Organic causes of feeding difficulties in pwCF must always be ruled out, and developmental considerations accounted for. The differential diagnoses often include eosinophilic esophagitis, gastroesophageal reflux disease, celiac disease and inflammatory bowel disease, which includes Crohn's Disease and ulcerative colitis. It is important to screen patients for symptoms such as abdominal pain, nausea, vomiting, early satiety, dysphagia, as well as stooling pattern—both constipation and diarrhea. Asking about systemic symptoms such as fevers, fatigue, rashes, arthralgias, and mood—specifically anxiety and depression, is also key. Behavioral considerations should be assessed, including details related to contents and timing of meals, snack times, and how they fit into the lifestyle of an individual with CF, as well as any avoidance behaviors surrounding mealtimes. Factors such as amount of time it takes to complete a meal in relation to when pancreatic enzyme replacement therapy is taken is important.
4.2 Clinical implications and recommendations
The past several years has seen tremendous medical advances in the treatment of CF with the initiation of HEMT, which are beginning to change the landscape of CF care. Although more investigation is needed to better understand how eating and body image concerns present across developmental stages in the context of HEMT, these issues continue to remain a prevalent concern in this population. Sudden weight gain that is commonly experienced among pwCF on HEMT may lead to changes in eating habits and more dissatisfaction with one's body.10 This occurring in a population of individuals who have experienced a clear focus on their weight and BMI as predictors of health status only exacerbates the likelihood of disordered eating. The prevalence of these concerns and the connection between weight gain and/or body image concerns and HEMT likely has an impact on adherence to HEMT for pwCF. There has been recent increased attention to the importance of addressing body image concerns and eating behaviors as part of quarterly multidisciplinary CF visits, however recommendations for specific interventions are needed to address these concerns as they arise.8, 12
4.2.1 Weight neutral approach
As weight/BMI has historically been used as a health outcome and marker for pulmonary function for pwCF, and that CF clinics need to report on BMI for credentialing purposes, goals in clinic tend to be centered around achieving a particular BMI. It is important to recognize that changing the way multidisciplinary teams address weight/BMI concerns may be challenging due to this long-standing emphasis. However, BMI has a number of limitations, including its inability to differentiate fat mass (FM) from lean body mass (LBM), with the latter thought to confer health advantage. Body composition can be measured with different techniques, such as CT Body Composition, Dual-Energy X-Ray Absorptiometry and Bioimpendance. These techniques have not been studied in the CF population but are promising for teams to consider as conversations around weight may eventually shift away from utilizing concrete BMI goals, due to easier weight gain/maintenance after the initiation of HEMT.
To begin shifting the conversation around weight for pwCF, one important consideration that applies to all CF care team providers is to prioritize the way care is delivered during clinic visits. Framing questions in an open-ended way, reflecting on answers, forming collaborative goals, and supporting pwCF's autonomy to make health-related decisions are all techniques providers can use to promote health outcomes and ongoing collaboration with pwCF. When discussing pwCF's weight/BMI, nutrition, eating habits, or body image, a weight neutral approach (WNA) can be utilized to guide conversations. Weight neutral approaches are frameworks that consider body weight as one of many interconnected markers of general health and wellbeing, rather than the primary indicator of good health.43-45 It is becoming increasingly more recognized that a WNA is an effective alternative to traditional weight loss approaches for promoting health.46 It also appears that this perspective in healthcare has some success with addressing disordered eating, eating disorders (BN), and body image concerns.47-50
Within a WNA framework, there is typically a focus on improving one's relationship with food, removing judgements about food (e.g., categorizing food as “good” and “bad”), becoming attuned to hunger and fullness cues, prioritizing emotional and physical wellness over pursuing weight loss, and advocating for the eradication of stigmatization and discrimination of people with larger bodies.50 The Health at Every Size.51 (HAES) approach is one example of a WNA that can be easily implemented during CF clinic visits. Many members of the CF care team, including dietitians, can feel supported in framing conversations about eating, nutrition, and body size in a manner that incorporates the principles of HAES and WNAs. This could look like prioritizing patients’ goals over focusing mostly on BMI or specific nutritional requirements, and using empowering, weight inclusive language that is supportive rather than problem-focused.8 Especially with the on-boarding of HEMT and associated effects on weight, nutritional approaches that emphasize intuitive and/or mindful eating may help to address weight-related concerns, changes in body image, or disordered eating behaviors. However, there is currently little research examining the efficacy of WNAs in chronic illness populations with dietary management components, and no studies including pwCF. Additional investigation is needed to determine how WNAs may be implemented to address body image and/or eating concerns tailored to specific considerations that accompany CF.
To implement weight inclusive approaches on multidisciplinary teams, continuing education for clinicians may be necessary. The Association for Size Diversity and Health (ASDAH) offers training on the HAES curriculum and additional resources that promote health equity and address weight-related discrimination. Clinicians may also benefit from additional training on the identification and treatment of disordered eating. Continuing education on eating disorders can be accessed through the National Eating Disorder Association (NEDA) and the International Association of Eating Disorders Professionals (IAEDP), and other established eating disorder treatment centers such as the Eating Recovery Center (ERC) and The Emily Program.
4.2.2 Early intervention
Early interventions aimed at preventing disordered eating and body image concerns are critical in the early childhood years. Caregiver mental health is well-understood as a key indicator of their child's improved physical and mental health and is often routinely assessed during initial CF clinic visits. Clinicians should make efforts to ask open-ended questions about parenting stress as it relates to their child's nutrition status and feeding behaviors during infancy and toddlerhood, specifically. Addressing parenting stress through brief, focused conversations and education during clinic visits may help caregivers learn coping strategies that can be implemented during mealtimes to manage the stress and frustration that may arise when challenging parent-child interactions occur. It is important to normalize these stressors as part of common child development, while also acknowledging the heightened anxiety many parents of cwCF experience about their child's growth. Using a multidisciplinary, but coordinated approach, among several disciplines on the CF care team (i.e., dietitian, social work, psychology) can help parents feel supported and more confident in promoting healthy eating and mealtime behaviors.
Psychologists and/or social workers on the CF care team may provide behavioral management strategies that parents can implement during mealtimes in clinic, or refer families for more specialized services on an outpatient basis (i.e., outpatient therapy with a psychologist using evidence-based intervention), if warranted. Arming parents with evidence-based child behavior strategies that promote positive parenting and foster positive parent-child dynamics around feeding in the early childhood years helps to create long-lasting healthy relationships with food, the effects of which extend throughout adolescence and into adulthood.
4.2.3 Assessment and treatment considerations in multidisciplinary CF clinics
Brief screening questionnaires can be used during CF clinic visits to assess a wide range of eating behaviors and body image concerns. For parents of younger children with CF, several instruments exist that can be used to assess child eating behaviors, parent management strategies, and/or symptoms of picky eating or ARFID. The Behavioral Pediatrics Feeding Assessment Scale (BPFAS52) is a brief parent-report questionnaire that assesses both child mealtime behavior and parent's perceptions of mealtime and strategies used to encourage eating. The BPFAS can be easily administered and scored during clinic visits, which gives clinicians an opportunity to make immediate recommendations based on severity of scores.19 The Nine Item Avoidant/Restrictive Food Intake disorder screen (NIAS) is another brief screening instrument that can be used to assess for ARFID, specifically, in young children.52 See Table 1 for a list of screening tools.
| Screening Tool | Topic Measured | Reference |
|---|---|---|
| Behavioral Pediatrics Feeding Assessment Scale (BPFAS)a | Mealtime-specific child behavior; parental strategies and perceptions of child behavior at meals | Crist, W., & Napier-Phillips, A. (2001). Mealtime behaviors of young children: a comparison of normative and clinical data. Journal of Developmental & Behavioral Pediatrics, 22(5), 279-286. |
| Nine Item Avoidant/Restrictive Food Intake disorder screen (NIAS)a | Assesses avoidant/restrictive eating patterns; comprised of three subscales (Picky Eating; Appetite; Fear) | Burton Murray, H., Dreier, M. J., Zickgraf, H. F., Becker, K. R., Breithaupt, L., Eddy, K. T., & Thomas, J. J. (2021). Validation of the nine item ARFID screen (NIAS) subscales for distinguishing ARFID presentations and screening for ARFID. International Journal of Eating Disorders, 54(10), 1782-1792. |
| Eating Disorder Examination Questionnaire (EDE-Q)a | Assesses the range, frequency, and severity of behaviors indicative of clinical eating disorders; comprised of four subscales (Restraint; Eating Concerns; Shape Concern; Weight Concern) | Fairburn, C. G., Cooper, Z., & O'Connor, M. (1993). The eating disorder examination. International Journal of Eating Disorders, 6, 1-8. |
| Eating Disorder Inventory (EDI-3)a | Assesses symptoms and behaviors of diagnostic eating disorders | Garner, D. M. (2004). Eating disorder inventory-3 (EDI-3). Professional manual. Odessa, FL: Psychological Assessment Resources, 1. |
| Eating Attitudes Test (EAT-26)a | Measures symptoms and concerns characteristic of eating disorders. Can be used to assess for eating disorder “risk”; or, symptoms that have not reached diagnostic criteria for an eating disorder | Garner, D. M., Olmsted, M. P., Bohr, Y., & Garfinkel, P. E. (1982). The eating attitudes test: psychometric features and clinical correlates. Psychological medicine, 12(4), 871-878. |
| Cystic Fibrosis Questionnaire- Revised (CFQ-R) | CF-specific tool that measures impact on overall health, daily life, well-being, and symptoms. Contains and eating and body image subscale that can be used to assess for eating and body image concerns. | Quittner, A. L., Sawicki, G. S., McMullen, A., Rasouliyan, L., Pasta, D. J., Yegin, A., & Konstan, M. W. (2012). Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national sample. Quality of Life Research, 21, 1267-1278 |
- a These instruments are valid and reliable measures that have been used in studies of people with CF, but are not yet validated for this population.
As body image concerns, disordered eating, and eating disorders often emerge in adolescence, routine screening may be warranted as standard care among multidisciplinary teams. In 2022, Kass et al. surveyed CF healthcare providers on the perceived importance of disordered eating and/or body image concerns for AYAwCF, as well as current screening practices. Results of their study demonstrated an overwhelming majority of respondents felt that screening for body image concerns (79%) and disordered eating (82%) should be a part of standardized CF care, while only 2.7% of respondents utilized formal screening tools in practice. Several screening tools exist and can be easily administered to pwCF during medical clinic visits; these include the Eating Disorder Examination Questionnaire (EDE-Q), the Eating Disorder Inventory (EDI-3) and the Eating Attitudes Test (EAT-26).53-55 However, these tools have not been validated for use with pwCF, nor have they been widely used in research after HEMT approval. The CFQ-R (Cystic Fibrosis Questionnaire-Revised) contains body image and eating disturbances domains, which may be appropriate to utilize but may also need re-examination to address changes that are specific to the post-HEMT era.56 Moving forward, it will be critical to validate these instruments among pwCF, or to create a CF-specific tool that assesses disordered eating and/or body image concerns. Additionally, incorporating screening practices and recommendations into CF care guidelines would provide clinicians with concrete steps to address these issues within the context of multidisciplinary care.
Utilizing screening tools to guide clinical assessment are initial steps for CF providers to take, followed by brief interventions in clinic and referrals to outpatient providers when clinically indicated. It is essential for teams to establish partnerships with community organizations that specialize in eating disorder treatment, along with therapists, psychologists, and social workers who may provide more long-term psychotherapeutic support to address disordered eating or body image concerns. CF clinicians may consider taking on consultative roles with community providers when collaborating, to ensure comprehensive approaches to care.
5 CONCLUSION
People living with CF, their families, and CF care team members have witnessed years of notable improvement in CF-related outcomes, quality of life, and survival for those with the disease. As the phrase “living with CF” really has become more of the norm, some of the significant symptoms of CF that historically served as a barrier to putting CF on the backburner have disappeared in the face of HEMT. In CF, growth and adequate weight have always been strong indicators of health-related outcomes, but the common struggle to maintain these nutritional markers has lessened for many on HEMT. Both the past emphasis on BMI and routine measurement of nutritional status, and the present drastic improvements in ability to gain weight and potential changes in body size, all place pwCF at great risk for body dissatisfaction, body image concerns, disordered eating, and even diagnostic eating disorders. This is an area that has been widely understudied in the CF community and the time to better understand the prevalence, impact, and course of treatment is now.
The multidisciplinary CF care team is well-positioned to address underlying risk factors and treat conditions associated with body dissatisfaction and eating disorders. In the same fashion that other potential CF-related comorbidities are addressed, screening for early warning signs and treating concerns about body image and disordered eating when identified can be done in the context of routine CF care. All CF care team members can feel better prepared to assess and treat underlying body dissatisfaction and/or disordered eating through conversations with pwCF about perceptions of their body and nutritional status, the use of standardized screening tools to identify risk factors, and a WNA framework to shift the focus from objective markers of optimal health to more subjective experiences and individual health-related goals. More research is needed to better understand the prevalence of body dissatisfaction and disordered eating in pwCF across developmental stages and cultural backgrounds, so that clinicians can provide inclusive care and better support pwCF's overall health and wellbeing. In the new era of HEMT, an individualized and weight-neutral approach may replace the high-calorie, high-fat dietary recommendations which have existed thus far.8 This approach, along with engaging with the patient and caregiver in an open dialog about eating and body image, should be considered by the CF care team.
AUTHOR CONTRIBUTIONS
Emma R Lyons: Conceptualization; Writing—original draft; Writing—review & editing; Visualization. Emily Muther: Conceptualization; Writing—original draft; Writing—review & editing; Visualization. Sabina Sabharwal: Conceptualization; Writing—original draft; Writing—review & editing.
CONFLICT OF INTEREST STATEMENT
The authors declare no conflicts of interest.
Open Research
DATA AVAILABILITY STATEMENT
Data sharing is not applicable to this article as no new data were created or analyzed in this study.
